Yeah the only thing with SCD, and SCD definitely works for me at least by the way, is that it allows lots of fruit and I'm wondering if that could be preventing eradication of the bacterial overload.Male mid 40s.SCD only, since 2006. Since 2015: mesalamine 4.8 g/day and salofalk enemas as needed.Psyllium husk (isabgol) 2 tbsp's morning and night (4 total)

Brucen - The guy my friend went to see was over on the west side of Los Angeles near Marina Del Rey, CA. I will have to ask him again what the guys name is. I don't know if thats better for you. Also he was a little more expensive around 350 a visit and you'll need at least 2 visits plus supplements. So pretty pricy. If not I'd try to look for someone in your area. I really don't think this is some big secret as I found my guy pretty easily in North Hollywood.

Chiron - They doctor I posted was not cheap but everything included blood tests and supplements was around $500 bucks for 2 visits. I did not go back after the diet, as I was feeling so good I didn't see the reason to waste another $250 bucks for him to say everything looks good. Also, I listed on an earlier post the links to the supplements.

Uniform Charlie - I was told this diet was tailored to my specific diagnosis Parasympathetic Imbalances so I don't know if this diet would work for everyone but I'm curious if my friend who did it, was his diet the exact same thing? I will check and let you guys know.Diagnosed in 2012

When I read about experiences of remission with diet only, I am always wondering how much the diet plays a role and how much is actually placebo effect. Considering how hard it is to stick for a long time to some of these very restrictive diet plans, those who do must be surely extremely motivated and believing in it, hence the strong placebo effect.

BTW, there's actually few bacteria in the stomach, because its acid environment makes it difficult for bacteria to survive. The vast majority of the gut microbiota is in the colon.DX with distal UC in April 2016.

I have followed the Specific Carb diet for a number of years and it works pretty well, but i still have occasional flares. This diet is more restrictive but worth trying if it really takes care of the flares. I have had UC for 20 years.

adamas said...When I read about experiences of remission with diet only, I am always wondering how much the diet plays a role and how much is actually placebo effect. Considering how hard it is to stick for a long time to some of these very restrictive diet plans, those who do must be surely extremely motivated and believing in it, hence the strong placebo effect.

BTW, there's actually few bacteria in the stomach, because its acid environment makes it difficult for bacteria to survive. The vast majority of the gut microbiota is in the colon.

trust me - it's not a placebo effect - I believe in God, not much else - i just do what works -dx'd with pancolitis 12/21/03 current supplements:vit D, vit K2, cal/mag - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

adamas said...When I read about experiences of remission with diet only, I am always wondering how much the diet plays a role and how much is actually placebo effect. Considering how hard it is to stick for a long time to some of these very restrictive diet plans, those who do must be surely extremely motivated and believing in it, hence the strong placebo effect.

BTW, there's actually few bacteria in the stomach, because its acid environment makes it difficult for bacteria to survive. The vast majority of the gut microbiota is in the colon.

trust me - it's not a placebo effect - I believe in God, not much else - i just do what works -What diet are you following and how long did it take to figure that out?

I didn't believe in diet either as my GI told me it was a problem with my immune system that makes my brain think I have food poisoning and it pumps stuff into my stomach that tries to fight an imaginary battle that really isn't there and thus I end up poisoning myself and it tears up my colon. So for the longest time I didn't think diet mattered until I tried eating chocolate and fried foods and nuts etc. These things put me into a fair immediately. So I tried to cut out sugar to eliminate the food that feed the inflammation. It helped but my UC ultimately came back. With this crazy diet it was time to get serious and remove all possible inflammatory foods and to my surprise it work. I still haven't been able to confirm whether it's all the same diet or do the blood tests actually determine what specific foods you have to avoid. But I'm seeing my friend on Monday so I will post something Tuesday to confirm it's the same diet or if he was given a different list of foods.

Well, good for you if it works. I still believe that placebo has a role in it.

Or maybe I am biased because for me food is one of the greatest pleasures in life, I have always enjoyed fine food since I was born (I am Italian...), and I can never imagine a life on a restrictive diet, having to give up pasta, bread, cheese or all the other things I love.DX with distal UC in April 2016.

I feel you in regards to living life on a restrictive diet. Trying to avoid so many foods for me would have been too much to sustain especially long term which is why I'm working on alternative methods for my own case. That said though, diet can definitely help in many cases, just not all. The importance of the different factors at work can vary person to person just like the medications that work vary.If I were to throw out a quick theory on SCD, I would say someone with an impaired epithelial ion transport would have a hard time absorbing certain carbs/sugars leading to increased stool bulk, diarrhea and an altered microbiome. Such person would likely benefit from the SCD diet. I don't think it would cure it in most cases but it would likely bring relief and the chance to alter the biome. I would worry about sustainability though again.

Oh, the diet is only for 10 weeks. Not forever. There's no way I could do this diet forever. F that! 10 weeks was hard enough.

If you believe in the theory that the cause of people stomach problems is an imbalance in stomach flora and the only way to remove a large majority of bad flora is by eliminating all foods that promote bad flora (i.e. this diet) so your stomach can go back to balance and then you can eat anything you want. I can now eat anything I want. Like I said previously, I tried to get my stomach to flair just to see if this diet really works or not and I couldn't get it to go bad, even after eating stuff that I would have never eaten prior to this diet.Diagnosed in 2012

I hated not being able to eat hot sauce and garlic. Everything else I was OK giving up but hot sauce and garlic made me go this far.I'm far enough into my research to where it's not individual items I see but the cross feedback between multiple factors. For example, intestinal transit time can affect the flora just as the flora can affect intestinal transit time. The flora can also affect inflammation which can affect transit time which can affect the flora and so on. Diet can definitely affect these factors but I can't willingly place sole hope on any one factor. In my theory, each case is a different combination of factors and we have to be mindful that addressing 1 factor as much as we can may not fix the issue. Also worth noting is that other than pathogens, most of the bad bacteria aren't really bad, they're just imbalanced. Even when you bring your flora into balance, the bacteria will still be present but just in a more healthy balanced relationship with the other bacteria. Right now, diet wise, I can eat most of the foods that caused bleeding and such but I still don't touch dairy or gluten. I may someday but I'm not that brave today. I will say though modifying my diet helped me get through some pretty tough times I don't like to look back at.

Steve_A said...I didn't believe in diet either as my GI told me it was a problem with my immune system that makes my brain think I have food poisoning and it pumps stuff into my stomach that tries to fight an imaginary battle that really isn't there and thus I end up poisoning myself and it tears up my colon. So for the longest time I didn't think diet mattered until I tried eating chocolate and fried foods and nuts etc. These things put me into a fair immediately. So I tried to cut out sugar to eliminate the food that feed the inflammation. It helped but my UC ultimately came back. With this crazy diet it was time to get serious and remove all possible inflammatory foods and to my surprise it work. I still haven't been able to confirm whether it's all the same diet or do the blood tests actually determine what specific foods you have to avoid. But I'm seeing my friend on Monday so I will post something Tuesday to confirm it's the same diet or if he was given a different list of foods.

Cure is whatever you find that allows your system to be at its peak. Though I believe the meds should only be needed to reduce symptoms and allow the diet factors to work their magic.

After the daily symptoms decrease, then be vigilant for the next 6 months to a year continue with heavy hydration, heavy probiotic based diet with none of the other usual culprits, red meat, refined sugar, processed box food, bad fats, too much rough fiber,....will result in forever cure. ......after a year keep up the same regimen but you will be able to have some more of the bad stuff from time to time

Here is my cure: Mesalamine Enemas and if you notice a radical difference in your symptoms right away, then for the 1st 6 mos to a year.NO RED MEAT and keep meticulous food diary to find your food trigger/allergy. I think you can have multiple triggers but hopefully only one is the main one causing the major issues. But all the other little ones combined strength makes for a formidable tiny daily storm. You find the main trigger for you and then your other healthful assaults can sway the end results back to healthiness. I know others who red meat was the culprit, so start with that and keep a mindful eye of exactly what else might be a whopper that you are allergic too.

Drink ton of Coconut WaterEat Ton of Coconut YogurtUse about a Bottle per month Inner-Eco Coconut Water with live kefir (found in whole Foods)Reduce Fiber Intake

then remove all the other bad things in your diet that you know obviously are bad

after you have been in remission for a good year then you can introduce some of the diet elements you had dropped for a year, just don't go overboard and continue with hydration and live probiotics

adamas said...When I read about experiences of remission with diet only, I am always wondering how much the diet plays a role and how much is actually placebo effect. Considering how hard it is to stick for a long time to some of these very restrictive diet plans, those who do must be surely extremely motivated and believing in it, hence the strong placebo effect.

BTW, there's actually few bacteria in the stomach, because its acid environment makes it difficult for bacteria to survive. The vast majority of the gut microbiota is in the colon.

trust me - it's not a placebo effect - I believe in God, not much else - i just do what works -What diet are you following and how long did it take to figure that out?

Are you taking any medications?

my "diet" is listed in my signature - at least the bulk of it - i aslo eat lots of fruits and raw/cooked veggies -

no meds for that last 5+ years -dx'd with pancolitis 12/21/03 current supplements:vit D, vit K2, cal/mag - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

So, I spoke to my friend and what he had was called Small Intestinal Bacterial Overgrowth (SIBO). I’d never heard of (SIBO) before but when I looked into this there was a lot of information about his diet on the internet. And the symptoms are very similar to UC. His treatment was similar to mine but still very different. His diet was much more forgiving but still not easy. His treatment was broken up into 3 phases. (See below) (Also, I looked at all the diets I could find for SIBO but could not find my specific diet nor could I find anything as restrictive.)

Phase 2: increase genetic support while continuing SIBO treatment (continued antibiotics or transitioning to herbals). Phase 2 is complete when SIBO test comes back within normal limits and when highly methylated injectable or supplements are well tolerated.

I found his diet online: https://www.siboinfo.com/uploads/5/4/8/4/5484269/sibo_specific_diet_food_guide_sept_2014.pdf

As for this all being a placebo effect, I don’t know or really care, as this diet worked for me. Everything I read makes perfect sense, that a person has an excess amount of bacteria in their stomach or intestines and the common foods they eat only exacerbates that problem and never allows the stomach to go back to balance. And not some mysterious auto immune disease that has no cause and no cure like my GI doctor explained to me.

I am a sceptic and I just don’t trust modern conventional medicine when no cure is available and only suppression through the purchase of medication is the treatment - for life! When I saw my general practitioner last week for may annual physical and I told him about not having any symptoms of UC (a so called incurable disease) he said “Great!” and couldn’t care less on how I did it or what I did to feel 100% better. Why? Because he’s not interested in a cure as most doctors only believe in what is prescribed in traditional medical practices which are structured to ultimately keep you on the hook to keep buying their medication.

Here some detailed info on SIBOhttps://blog.kettleandfire.com/sibo/

Remember, for those who love food as I do. It’s not forever, only a few months. But you have to suffer a little to get you stomach back to normal, then you can eat what every you want. And imagine not having to panic every time your stomach rumbles like I did. I hope more can benefit from this or any other diet available. Don’t give up or just accept that this is a way of life. My biggest fear of having this disease was that the rampant inflammation would lead to other problems such as diabetes or even cancer. I hope I’m on the other side of this but I would do it all again if it came back. Keep looking for a cure. And post your results on this board good or bad. I'll give updates when I can.

sorry beave, yeah I am new at trying to get this blog/website working, but I did have a moderator on this site tell me to just summarize it and that is what I have done. I include the link to my story so people can see the events that led me to get cured. Of course as everyone with UC knows, most cures don't always work for others.

I have noticed on this site that folks have some odd notion that using the big c word is like calling out Murphy's Law or something....I don't get it myself, seems a bit over dramatic to hang on any one word. But yes I use the word 'cure' and I will keep using it, and I am proud to use it, because if I couldn't use it, then that would mean I am still in a lifestyle almost not worth living...and that is something I never want to return to. I am a big Murphy's Law guy, so just to utter these words is very big for me:::::::::: and how confident I am that UC is not coming back for me.

I can tell you, that I have searched some of my principle bullet points on my cure, and other posts mention my very 1st item for immediate symptom relief, but I have yet to find anything out there like what I mention in my 'CURE', that defines so much of what works rather than just want to remove.

'beave' reading your post and its negativity, makes me know you must be in pain, I pray for you, and if you are suffering, I hope you can see my full story someday on my site, but the moderator said not to copy link so many times, because its like spamming, so I won't do that anymore, I'll just keep posting my CURE until some folks try it and say it just ain't working. But since I finally shared it with a friend here in in my town and she was amazingly off all her meds within 2-3 weeks of starting my cure......then it is my duty to share with as many folks as possible this process.

I understand you're happy to feel better and wish to scream it from the hills. We all celebrate you feeling better as we all know how bitterly UC symptoms and suffering sucks. I wish you continued success.

However, ditto the stop copy/pasting the same exact text as it is very spammy, as is the linking.

I feel the word 'cure' should be replaced with 'remission' for accuracy. As UC is for life and you are in complete denial if you say otherwise, as we all eventually relapse. Not a matter of 'if' you/I flare but rather a matter of "when" you/I will flare. It's just reality for us with chronic illness, even though we'd all love to wish UC away in an instant if it would only work. A number of us have been living with UC for decades and it doesn't just go away forever (a remission might last 1, 2, 3, 5 years or sometimes longer).

Many over the years have been derided for using the word 'cure' here (ginger/cactus leaves/and any number of things deemed as miracle cures) on the forum, it's not just you. Cure is a 4-letter word like lots of other expletives are, and it is taken the same by some who suffer the most from debilitating UC symptoms for prolonged periods of time. As the facts and reality over the decades state there is no cure. Facts also state that some combination of medications, diets, and/or supplements must be taken over the long term for the best results; we need a maintenance treatment.

When/if a true cure is developed for UC, then he/she will get his/her nobel price in medicine. I hope UC is cured within my lifetime, but I would not bet much money on it.Moderator Ulcerative ColitisJohn, 40, UC Proctosigmoiditis Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasaYou might have UC if you leave the house wearing socks and return with none... emergency tp...

ipoop...I'm confused, I stop the links and now you say copying and pasting the same text is bad too? If this is what worked then why would I type something else every time. When I was suffering from UC, I visited this site many a time and everyone always has something different to say about treatments, so many that it can get quite clouded out there with so many things to try. But boy did I try all of them.

As far as the word cure. Why are you so much in to thinking it is a chronic illness? Maybe its not a chronic illness, maybe its a symptom of the terrible environment we live in, included but not limited to: processed, hurried, stressed, over medicated, dehydrated, over preventative medical procedures, etc..

I noticed that since I have starting posting, all I have received from moderators and now posters is negative things on what not to say. Now some of this is in part my fault for adding a link so many times, but the fact that no one has even commented on my process or even asked a question, very much scares me that suffering folks out there are in fact just confused by all the mumbo jumbo out there and fancy medical procedures or diets.

Once I figured out my steps, not only does it make complete common sense, but it really shows just how unhealthy us humans are and what we consider is beneficial to ourselves as a living organism. I am probably more like in my 5th year of remission as folks call it. Once you figure out the steps, its quite easy to stay healthy if you just aren't an idiot and just throw caution to the wind, and believe me, I eat plenty, but its mostly from scratch. I bet 99.9% of the posters here do not hydrate near enough!!!

I agree with you when you say..."Facts also state that some combination of medications, diets, and/or supplements must be taken over the long term for the best results; we need a maintenance treatment" But I don't see this as a bad thing, it more seems to be obvious that after a part of the body has trauma, it could very well take time to heal back to 100%

I guess maybe I will have to post more here after I am 10 years in remission for folks to listen.....such a shame my REMISSION/CURE will just have to be for me and my friend for now, till folks decide to listen and not just critique

So, I spoke to my friend and what he had was called Small Intestinal Bacterial Overgrowth (SIBO). I’d never heard of (SIBO) before but when I looked into this there was a lot of information about his diet on the internet. And the symptoms are very similar to UC. His treatment was similar to mine but still very different. His diet was much more forgiving but still not easy. His treatment was broken up into 3 phases. (See below) (Also, I looked at all the diets I could find for SIBO but could not find my specific diet nor could I find anything as restrictive.)

Phase 2: increase genetic support while continuing SIBO treatment (continued antibiotics or transitioning to herbals). Phase 2 is complete when SIBO test comes back within normal limits and when highly methylated injectable or supplements are well tolerated.

I found his diet online: https://www.siboinfo.com/uploads/5/4/8/4/5484269/sibo_specific_diet_food_guide_sept_2014.pdf

As for this all being a placebo effect, I don’t know or really care, as this diet worked for me. Everything I read makes perfect sense, that a person has an excess amount of bacteria in their stomach or intestines and the common foods they eat only exacerbates that problem and never allows the stomach to go back to balance. And not some mysterious auto immune disease that has no cause and no cure like my GI doctor explained to me.

I am a sceptic and I just don’t trust modern conventional medicine when no cure is available and only suppression through the purchase of medication is the treatment - for life! When I saw my general practitioner last week for may annual physical and I told him about not having any symptoms of UC (a so called incurable disease) he said “Great!” and couldn’t care less on how I did it or what I did to feel 100% better. Why? Because he’s not interested in a cure as most doctors only believe in what is prescribed in traditional medical practices which are structured to ultimately keep you on the hook to keep buying their medication.

Here some detailed info on SIBOhttps://blog.kettleandfire.com/sibo/

Remember, for those who love food as I do. It’s not forever, only a few months. But you have to suffer a little to get you stomach back to normal, then you can eat what every you want. And imagine not having to panic every time your stomach rumbles like I did. I hope more can benefit from this or any other diet available. Don’t give up or just accept that this is a way of life. My biggest fear of having this disease was that the rampant inflammation would lead to other problems such as diabetes or even cancer. I hope I’m on the other side of this but I would do it all again if it came back. Keep looking for a cure. And post your results on this board good or bad. I'll give updates when I can.

Good Luck.

Steve

Thanks for taking the time. So the diet you did for 10 weeks. What was the dose and timing of the supplements? In your initial posts you listed only 3 of the supplements by link. How many total supplements where there and can you provide links for the others?

The idea is most of us tell our story and what worked for us within a dedicated post. Others comment and that post remains searchable on the forum, as a resource to others who are looking for solutions.

What you're doing is posting links and copying/pasting the same information within everyone else's posts. I must have read the same, exact text from you 5 or more times yesterday, as an example. That's thread-hijacking, spammy and you're taking away from others... Not sure how much clearer I can be on this issue. And how much I grow tired of repeating myself on what should be obvious.

The majority of us recognize that there are many possible solutions to get UC into a remission, and that nothing works universally for everyone. Everyone responds very differently to individual UC treatments. There's a lot of trial-and-error for all of us. What's one's miracle treatment does nothing for another, and can even make another's UC symptoms a whole lot worse. My toolbox has many different tools within it, many are for very specific purposes and have limited use in other applications (a hammer is great for hammering nails and removing nails, however is pretty crappy for removing a bolt from metal). The same goes for UC, there's many different treatments appropriate for different severity of UC. It's good to have lots of options in your UC toolbox of things to try. However, there is no "One Hammer above them all (like the one ring from lord of the rings lol)" that is guaranteed to cure everyone of this wretched disease.Moderator Ulcerative ColitisJohn, 40, UC Proctosigmoiditis Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasaYou might have UC if you leave the house wearing socks and return with none... emergency tp...

keep posting there dagan - and use all the r and c words you want - myself, i have never understood all the fear attached to such things -

i haven't taken time to read all your offerings, but i will - thanks for sharing -

TTdx'd with pancolitis 12/21/03 current supplements:vit D, vit K2, cal/mag - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

iPooP...are you sure you are not a politician? rhetoric doesn't help anyone and I believe I posted more like 3 times yesterday, but I can't seem to find a page on your site that shows all of my posts so I can't be sure, but 5 times seems a little more than I rememeber....and how can it be hijacking if I am responding to a post for help. I think the definition of hijacking would be responding with the same reply more than once to the same post, not different posts. Are you saying the reply to the post has to be absolutely specific to the question? Why can't the reply be a regimen that in part is an answer to the specific question?

thank you troubledturds, the only way anything gets better in this world, is sharing and communication, a thing the world is sorely in lack of and unfortunately is the exact opposite

you posted and then I looked at your regimen....our remission similarities are: hydration, eggs, and cal/mag...I also stick to grass fed beef but was off red meat for a good 2 years and now only very little and always ground.

I also suffer from Polycythemia Vera / Essential Thrombocytosis which is a gene mutation. While this disease is on the genetic level and pretty hard to compete against, I am trying to find, wait for it a 'cure' or at least more of what works for a healthy system that is busted with one of its fundamental Five Major Organ Systems of the Body completely irregular. I'm going to look into your k2. I believe I have read before on the 'K' family and never got around to finding something. I am very big into natural or live ways of intake over dry supplements.